The Strength to Love: The simplest acts leave the best memories.

It's been a while since I have post a new entry to my blog. My hope starting this blog would be to update it often, to use it as an avenue to share my thoughts, my struggles, my memories, my laughter. A place to heal. It has helped. It truly has. But I realized it is also so very hard. Some days writing down my thoughts seem harder than the memories that I want to keep alive. There is a wall that I put up. A wall that needs to come down a little more often. It is a wall of survival. It is the barrier between me functioning and being present in life and for my kids, and burying my head in my pillows. Without this wall, I don't think I could be present. This wall has made it possible to just be. Be a mom. Be human. Just be. But I realize, that I have to let the door open a little. The reality is that we are no longer numb. I am no longer numb. That wall went up pretty early on as the numbness started to subside. It gives me focus on the days that I just can't, it gives me courage to take that next step when I don't think I can...but I have to take those steps and feel at the same time. I have to remember that feeling is healing. Feeling is being human. Feeling is being alive.

Bryanna wanted to go to Disney Wold. She wanted to meet Princess Elena and see the animals at Animal kingdom lodge. She dreamed of being with the animals and princess every day. We talked about it extensively. She responded to the story of Disney when she was in the CICU. But ultimately she never was able to get her wish trip. At the exact time that we were picking out where to lay her to rest at the cemetery...when we were choosing her plot, Make a Wish called to discuss her Wish Trip. Words can't describe the devastation, the loss, the timing.
We wanted to make that trip happen. We wanted to give an unforgettable experience to Evey and Liam to honor Bryanna and to celebrate them. To give them some down time and fun away from life. But such a trip came with a very hefty price tag. One that we could not afford any time soon. We are still paying off Bryanna's medical bills, plus payments for her headstone, and every day bills. It just wasn't going to happen any time soon.

Just when I was going to give up on the trip, something absolutely amazing happened. Casey Cares Foundation heard Bryanna's story. Bryanna yet again touched the hearts of people that she never met. Though they typically do not do such lengthy far away respite trip, they rallied their donors and they made it happen. An amazingly generous donor donated a beautiful room in a spectacular resort in orlando, Medeival times donated a dinner show, American Airlines donated round trip tickets, in addition to the gift cards, treats, pjs and gifts for the kids... Then, we were connected with another amazing organization called Growth from Grief. Without hesitation, they donated a day at Disney, Seaworld, the Bones Museum and Coco key. This trip became a reality. It was so hard to think about how we were on the receiving end of such amazing generosity, and that we indeed qualify for it because we lost our princess warrior. It is through these organizations and donors that we found more moments of happiness, of relaxation, of pure joy in the kids that we never thought was possible again. Our pilot on our way to Orlando talked with me a few moments before boarding while getting his manifest for the flight, and then went out of his way to talk with Evey and Liam about their first upcoming flight and trip. He asked the name of Evey's buddy she was traveling with (Sid..who is Evey's trusty weighted turtle) and Liam's lovey. He then invited them to the cock pit to experience a moment of being a pilot. During his greetings through the intercom while we were getting ready to taxi on the runway, he welcomed Evey, Liam, Sid and Lovey on his plane. It is in these moments that magic is made. The cast members at Magic Kingdom went out of their way to make it special for the kids, for us. They did so many moments of kindness that meant so much. The team at the Marriott went out of the way to make a special basket of goodies for Mike and I, a ton of welcome balloons and a stuffed animal for both Evey and Liam. Every detail was beautiful. Every detail of this trip counted. Every detail from every person involved in making this happen made a difference.

We saw the kids drop their wall and have fun. We saw the kids splash in the pool and get excited about balloons and stuffed animals. We saw them be kids again. Until they remembered why we were there. While there were so many amazing moments and times, there were also tears and questions. Before going out to dinner one night, Evey and I sat in the kitchen of our hotel room and cried. I sat there holding Evey on the cold floor letting her pour her soul to me while Mike listened next to us and Liam tried to stay busy. I watched Liam look lost and sad as we go to bed or when he would be eating a desert, and say how much he missed Bryanna. This trip was so important. It was another opportunity for us to try to piece together our hearts and take another step forward through the pain. It was important for the kids to see that yes, they do indeed matter. But it was hard. While we enjoyed our time away, everyone was ready to come back. But being back was a stark reminder of our loss. Coming home didn't bring us Bryanna back. It brought us home to a void that we thought would be better. Sure, we know that this is life, that this is what happens after death, that nothing will bring Bryanna back. But sometimes, it just feels like she will be there waiting for us. She's not.

Liam asks about Bryanna. He asks about why we can't go visit her in heaven. He has to deal with a very adult concept at such a young age and try to grasp some level of understanding. That's hard. He had a doctor's appointment at Children's National yesterday. He was incredibly whiny and clingy the entire time. While we waited for Mike at one point, he told me he was sad that he couldn't see bryanna. That he knew this was the same hospital that she was in. On the way home, he asked if the cemetery we were passing was Bryanna's. It was not. These are the questions and the stress plaguing my four year old's mind. He got a little stuffed animal to keep during this visit and Mike got one for Evey to have as well. As they talked about their new pets, Evey asked where his appointment was. I told him it was at the hospital. She then so very gently told Liam that she didn't realize he was going to Bryanna's hospital. She asked how it was. He said if was ok. They both sounded so sad. This is our reality. Liam has another appointment there next week. It doesn't get easier.

Evey was so mad that she had to stop playing on the swing last night. So very mad...like screaming and yelling kind of mad. But in the end, it came out to be her only way to control her life in that moment. She really was really mad about Bryanna. She missed her so much that it hurt. She asked how I knew that Bryanna died and I told her how I laid next to Bryanna when she died. She screamed, she cried, she just wanted to be on that swing. Swinging was the one thing she could control. She could control how high she was, how much she would spin and when she would go or stop. It is so easy to think that she is just being a kid who is being demanding, unruly and defiant. But really, it is in that moment that she is trying to hold on to the little bit of life that makes sense. It is Evey's way of forgetting the pain, forgetting the void and trying to just be a kid. Losing that moment pushed her over the edge for the night. Dinner, bed time...it was all tears, it was all anger, it was all pain.

The day before we left on our trip, Evey and I stopped by the cemetery. Bryanna's headstone had been installed that day. The day before we were leaving on our trip to honor her and celebrate E and L. It was so beautiful yet so final. This Sunday, Children's National is honoring the children who have passed away at their facility by having a memorial service. Next week is the last day of first grade (liam will continue in pre-k for one more year), and would have been the last week of fourth grade for Bryanna. We have to continue to have the strength to keep taking that next step. It is hard. It is painful and there are days like today where it almost feels impossible. But the sun is shining - butterflies and birds are fluttering around reminding us that there is so much life in the simple things. The kids are transitioning to another part of their year. We have to take these little moments, these little steps and enjoy the moments of smiles, of winks, of kisses and hugs, of happiness. We need to feel the sunshine and breath in the warm air. We need to take note that through the low, we are blessed with amazing people around us that are there to pick us up.

Words cannot express our gratitude and appreciation for everyone who made this trip happen, for everyone who was there for us during Bryanna's treatment and afterwards through her passing. There are no words that could truly express how I feel most days and how much I recognize what everyone does for us. I have no words, just love.